With the NDIS rolling out nationwide it is time for the NDIA and its parent policy agency, Dept. of Social Services to start making policy on a number of disability issues such as that of people with autism spectrum disorder and challenging behaviours such as aggression. These people are a large portion of your clients mainly in tier 3 and fall often into the too hard basket due to high support needs and very difficult behaviour. They are the clients most NGOs and other providers do not want as they are expensive and a hazard at times to staff and other clients. I have a son myself who at times falls into this group and am well aware of other “informal supports “doing it very tough with such adult or adolescent children usually males. I live in the ACT but these issues reach out to every part of Australia where a family is caring for those with autism spectrum disorder and other intellectual disabilities and challenging behaviours. It is a very hard gig but needs real support and policy made to address these support needs otherwise informal support fold and the NDIS will bear full time costs for care.

Kind regardsKarna O’Dea

Very happy to discuss what is outlined in this paper

Member of Speaking Out for Autism Spectrum Disorder (SOfASD)a voice for people living with Autism Spectrum Disorder in the ACT

Policy questions for the National Disability Insurance agency (NDIS) on how is the NDIA responding to the needs of complex clients with challenging behaviours

Recently on several Facebook groups I have seen very sad posts by parents usually mothers of NDIS clients with complex support needs and challenging behaviours. The sort of constant obstacles they face due to these adult children usually men are aggression and other euphemistically called challenging behaviours. This apathy towards providing real support for these carers and their adult children worries me because there is no policy response to help these families. My son at 16 can also be aggressive and have behavioural outbursts and I do not want to have to continue caring without adequate support from the both the NDIS and providers able to provide the services he needs.

Many clients in the NDIs with aggression and challenging behaviours do not really fit the model of having choice and control. To be brutally honest many providers do not want to have to provide services to them because they are aggressive, hard to handle, cause endless problems, are an occupational health and safety issue for staff and the list goes on.

The NDIS seems to naively believe that informal supports in the form of aging parents will continue on and be able to cope. One of the Facebook posters on the NDIS grass roots discussion list and Disability Family Advocacy have had stupid obstacles put in the way of having a day program for her son with challenging behaviour in Geelong because the NDIS are not prepared to pay out a bit more for transport to this program. The mother is a much older woman coping with trauma from her spouse’s suicide and the constant ongoing issues with providers etc. over her son’s outbursts. It seems that the NDIS contributes stupidly to the monkey on the back problems for her and hinders rather than helps her to continue as her son s informal support

The NDIS is undoubtedly a positive step for many people in Australia - for those with physical disabilities, for those who can speak for themselves, for those who need basic levels of care and most importantly - for those whose behaviour is NOT a leading issue. Those whose problems centre on behavioural issues are a whole new ball game that you do not seem to understand or factor into your policies but so many of your clients fit this category.

You as the now disability agency do not seem to have set standards for providers of both housing and day programs to cater for this type of client.

Handing the care of people with complex needs and challenging behaviours over to anyone but properly trained staff is a recipe for disaster. While privately run homes with unskilled staff may work adequately in many cases, the people with the highest psychiatric and behavioural needs cannot and should not be handed over to people with minimal or no training and experience. Yet the NDIS have set up no standards over these issues

Those with severe intellectual disability and behavioural issues don’t usually live in group homes or by themselves as a matter of independence. They are there because the physical and emotional strength and age of informal supports (parents) are on the downward slope. The management and real improvement of people with challenging behaviours is a tenuous thing unless they are supported by staff who understand the issues and have appropriate training in how to manage problems caused by challenging behaviours. To manage such people providers needs a team of these professionals who can provide lot of input in regard to acquiring sensory materials and behaviour programs. Expert staff are needed to help develop plans for behavioural support to ensure and the safety of these NDIS clients and staff who worked to support them.

A typical infolding scenario in the NDIS environment is a client with challenging issues is on the top level of funding for his day program with a ratio of 2 workers to one. However, when things start to unravel because the client is expelled from his first day program because the staff could not control or deal with him. The second day program provider is also reluctant to take on the client, but finally agreed under certain trial conditions. Once the client breaches these conditions the program providers in all “good conscience” can get rid of him. Finally, a third provider decides after many meetings, that they could not accommodate the client in their program so the client and his informal supports are left high and dry. What should be noted is how many of these providers are registered with the NDIS. However, the NDIS will claim it does not function to provide “whole of life” care or to police the private providers who are supposed to occupy the market place. No that is the beleaguered informal supports job or a mythical provider who does not exist. However now that the State government disability agencies are out of the picture or in some cases going the buck should stop with the NDIS.

Waiting lists for group homes and other supported accommodation places can be long and no NGO will be running to the front of the queue with their hand raised, yelling “pick me”, to take on those with aggression or other challenging behaviours. So what actual choices will this leave difficult people other than TAKE IT OR LEAVE IT if they are lucky or just stay at home with your informal supports until they die. If a client is refused a group home place or other supported accommodation choice because of aggressive behaviour – where does he go? Who is the provider of last resort in this plan? In the changes due to the NDIS, providers still cherry pick to avoid clients with behavioural problems and so that leaves informal supports wondering who are the providers of last resort and how will they be funded to support the hardest to manage cases or if they will exist. Yet a large proportion of NDIS clients at level 3 fit this category.

When the NDIS covers all of Australia and have let all the states off the hook, it will have the country’s last disability agency that will be stuck having to fund and probably organise support of these difficult clients

So as part of this reality:

What policy responses have the NDIS come up with in answer to?

What is the NDIS doing about providers of last resort?

What is the NDIs doing to regulate NDIS registered providers who dump hard clients?

How is the NDIS intending to monitoring providers?

What is the NDIS doing to develop the market place for providers who specialise clients with challenging behaviours to:

develop behavioural management programs

supported accommodation services

day programs or other forms of community access that work etc. so and so on.

You inherited this wasteland for those with behavioural issues from the state governments so it is really up to the NDIS to sort out with client advocacy groups and informal supports how to respond and to provide or nurture evidence based answers not just fund and hope for the best

Which government agency will there be, to support and deal with issues relating to people with complex disabilities and behavioural challenges but the NDIS?